People with disabilities are a unique minority, a group that any of us can join at any time. I first identified with the group as a graduate student in the 90s when my hands were so non-functional that I had trouble doing many basic things … and no one could tell me if/when I would improve. Thanks to the advocacy of many individuals with disabilities, the Americans with Disabilities Act, (and related legislation) has set accessibility standards [1], and I soon learned, for example, to press the automated door-opening button at the front of my university building.
I will never forget the day that button failed me: A stranger became very angry on my behalf, opened the door, and went on to complain to the building manager. I was shocked, upset to think of myself in the terms he obviously did. I had an invisible impairment that, at the time, some people did not believe existed (echoes of the future!). Although I was high functioning, it had eliminated my ability to play the viola (a beloved hobby) and, from the perspective of a graduate student in Computer Science, seemed to make my career of choice next to impossible.
Like many of us, I knew little about what it means to be disabled. I decided to learn, and eventually embraced the concept, which helped me to view my impairment in its social and medical context, advocate for myself, and overcome the belief that my impairment meant I could not be successful in my chosen field. Over the decade since, I educated myself about disability theory and disability studies, taught courses about disability and technology, conducted research in assistive technology, and regained my hand function almost completely.
Unlike other minority communities, most of us are not raised with an understanding of what it means to be disabled, how to negotiate the societal implications of disability, or how to deal with prejudice when it occurs. At the same time, the disability community is a vibrant, active (and activist) group that has achieved major civil rights victories and developed a nuanced and thoughtful set of articles and books (e.g. [3,4]) that reflect on and interpret the experience of disability. For example, consider reading this essay by disabled anthropologist Gerry Gold on the social context of long term disability (specifically, going on LT disability insurance, a choice many of us may face).
We lymies have a lot to learn from that group. Perhaps first and most important, they are not “that group” — many of us are disabled. The label, although scary at first, can be a source of empowerment. For example, look at what our community, the disability community, has accomplished as activists. Consider the role of activism in our community, the Lyme community.
On the other hand, perhaps we also have something to offer the disability community. Much of the literature in that community focuses on the experiences of individuals with visibly obvious impairments; almost all of the literature is defined by the assumption that an impairment, once acquired, is a lifelong change to one’s person. Also, there is not a clear separation between illness and disability, and their interaction can have broad implications for how an individual with both is accepted (e.g., see Pinder’s article “Sick-but-fit” or “Fit-but-sick”? Ambiguity and identity at the workplace). Further, my personal experience has been that impairments may be acquired, and lost: it is the change in how I perceive myself (and disability) that is permanent. I cannot accept I somehow don’t belong in this group simply because my disability is defined and created by an illness for which a cure is possible at some unknown time in the future.
So ask yourself … “am I disabled”? Consider the implications — that you are not defined simply by your symptoms, that society may need to change its norms so it can benefit from all that you have to offer, that you are a person first and foremost… For me, disability gives a me a name and a structure for a difficult situation and access to a society of peers and activists and thinkers. Am I disabled? My answer is, Yes.
[1] For information on how this legislation affected disabled americans during the 1990s, a great resource is The Disability Pendulum: The First Decade of the Americans with Disabilities Act, by Ruth Colker
[2] Resources about the disability movement from my class on assistive technology
[3] The Handbook of Disability Studies, edited by Gary L. Albrecht, Katherine D. Seelman, & Michael Bury, contains many essays on the shaping of the field of disability studies, the experience of disability, and the context of disability.
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